THE ALBINISM PROJECT
During a trip in Uganda, while working on a reportage about refugees, I came in touch with the organization “Albinism Umbrella”. They care and support people with albinism in Uganda. Through their help I was able to get to know persons affected by albinism and to realise how much they have to fight in Africa to live a normal life. Albinism is a genetic condition where people are born without pigment (melanin). In Africa, Albinism is a much more frequent disease than in the rest of the world. Compared to an incidence of 1/20000 in western and european countries,
Africa shows average values of 1/3000, with pitches of 1/1400 in Tanzania. Persons affected by albinism are not protected against the aggressive UV solar radiations, so they easily develop skin cancers. Also, they often suffer from collateral handicaps or syndromes such as strong myopia, strabismus and nystagmus (involuntary eye movements which reduce both the vision and mental concentration). There are no medicines to cure albinism as such, but there are ways to prevent its secondary effects, like cancer. That’s what we aim to support and reinforce, for example by supplying solar screens, sunglasses and caps to protect skin, eyes and scalp.
Further problems associated with albinism are violence and persecutions. Due to deep-rooted superstitions, people with albinism are said to possess supernatural abilities and heal diseases, so they are constantly under threat to be kidnapped, killed and dismembered. Their body parts are used for rituals and potions; on the black market, witch doctors pay up to 75000 USD for an albino corpse. Families often sell their relatives to such high prices with no regrets. Especially children and young people are kidnapped for having their eyes and organs extracted, as the local police reports. Also, albino women are particularly threatened, because having sex with them is believed to cure HIV.
In 2017, 66 attacks against persons with albinism have been recorded in Malawi. 26 people with albinism have been killed in Tanzania; most of them were women and children. Beside that, a huge number of cases remain unreported because they happen in rural areas. Some Governments such as Kenya and Burundi are trying to fight these conditions through laws and sanctions, however with only little effects. Witch business is widely spread in Sub Saharan countries; at the same time, avidity and poverty in the population predominate, so rape, violence and the albino human trade go on and on.
THE ALBINISM PROJECT
Fear of being kidnapped, killed and mutilated make persons with albinism victims of their own society. For this reason, it is important to let people know about the plight that people with albinism face in Africa. They need help and support. The goal of this project is to put people with albinism in the middle of public attention in
Europe, in order to push people to react in favor of those with albinism or organizations like Albinism Umbrella. This project aims through books, exhibitions and web sites to tell the stories of people with albinism in Africa. At this starting level I will travel in 5 countries telling the stories of people which in Africa are retained to be “Zero Zero”.